This is my daughter, Lexy. She is persistent and fierce and hilarious. Her favorite things in the world are dance parties, playing ball, and having more dance parties.
I am going to break my typical way of thinking about Lexy to talk about her through the eyes of the world. I’ve gotten her permission to do this. We talked about how I wanted to share the ways some misjudged her so that we can help more children get access to talkers. This isn’t news to her. She’s lived this experience. She still lives it every day — fighting to be seen, heard, and respected. I am only talking this way now because a voice for everyone means everyone. Unfortunately, kids like Lexy often tend to be thought of as “the exception”. The “PECS does have a place for some” kids. The “well, are we sure they would benefit from that?” kids.
- Lexy has a long list of diagnoses: autism, intellectual disability, orthopedic impairments, apraxia, visual impairments, and chronic health conditions.
- Lexy does not identify any pictures when asked.
- Lexy does not follow one step directions.
- Lexy does not often respond to questions or comments from others.
- Lexy may not direct any communication to others for extended periods.
- Lexy’s communication can be subtle and difficult to recognize.
- Lexy has had many teachers who felt that she “lacked communicative intent”. She was originally recommended a 2 button switch when an assistive technology evaluation was completed.
- In subsequent AT evaluations, we were repeatedly told that X would be too many words, too many options, on and on and on. And let’s be clear — even just sixteen words. There are people who thought sixteen words were too many words.
- All people have the right to communicate.
- All people have the right to as many words as we can provide access to.
- All people do communicate.
Lexy currently uses a communication system that has a vocabulary of hundreds of words. She uses at least 75 of those words regularly. This includes core words. That’s right! Lexy, who was often taught under the assumption that core was “too abstract” most frequently uses core words. Words like different, go, bad, eat, drink, play… She loves to tell us mad and “you won’t let me do what I want.” All these words would have been unavailable to her in the single switch or fringe-focused picture exchange systems recommended for “kids like her”.
I’ve been doing this for a while — always working with the students who are most underestimated. I have never yet met a single child who did not need and deserve and have the right to robust language. Yet our profession continues to harm these children, to set arbitrary benchmarks that must be met before we give children what should be their fundamental right: a voice.
And that is why I listed all the things that Lexy cannot do. It is quick and easy for people to see Lexy now and say “that’s great for her, but it won’t work for Adam!” She is Adam. She is the student being blocked. She is the student who has spent years on the same stage of PECS. She is the student who is still working on that Big Mack switch. The only difference? We shifted. She didn’t change. She’s always been neurodivergent and bold and silly and fierce. We changed. We stopped blocking her and started encouraging her. This can be true for Adam, or Jane, or whatever student you have in your mind right now. It takes a fundamental shift — remembering and grounding your work in the fact that all means all.
In the spirit of that, I’ll be posting a series over the next month that showcases how we can use robust language systems to teach many of these “fundamental” skills. It has never needed to be “this skill or that system”. It can be both. It must be both.